existing in society but not thriving - perspectives of autism - report to the UK Government by The House of Lords Autism Act 2009 Special Inquiry Committee

Yes, good for you, keep us posted!

Glad that's working for you Bananatropics26 

Yeh autism makes me delusional at times. I will be in a group and I'll be scared people are out to get me stuff like that. But I just started some new antipsychotics so they should help. I do feel bit less paranoid already. 

I think every goverment innitiative is a strategy now, just like every business likes to tell us it's mission statement, it's just meaningless words that makes them appear to be doing something positive.

Small windows, say no more! (I have edited it so it hopefully reads better now!)

I wasn't sure when i read it - hehe my sorry!  one gets so nervous of saying or doing the wrong thing...

Thanks for your wishes

you too.

Yes, things have to start somewhere Kevmck .

There is a joke that springs to mind in context of the appraisal of the wider situation:

When asked how to get to...

Comes the answer - "well I wouldn't start here if I were you..."

Oh sorry sorry sorry, I meant that must have been destablising for you to recieve such hurtful comments, not on me reading them!

Wishing you strong stability and yes a stronger base on which to build up from!

I am sorry that the comments I shared are destabilising.

In so far as one needs confidence to be able to exist and interact with one's environment I recognise that something that may destabilise may appear problematic.

However if what happens thro' the experience is a stronger grasp on reality then confidence that is rebuilt afterwards potentially is more reliably based.

Best Wishes

Thanks for your kind thoughts Cinnabar_wing 

You have added to the metaphor perfectly :-)

Thats really helpful Phased.  

My brain has jumped a little literally on this and I am imagining actual windows (rationally I've re-read and realised my error, but I'm going to roll with this next bit anyway).

Perhaps aswell as having a small window, it's sometimes also really high up the wall. So someone with no issues just stands at their normal height window and it would take something major to knock them over. Where as when you are struggling, you have to stack a whole bunch of stuff up to see out of it. The more you have to stack, the more wobbly your footing, meaning the more likely you are to fall down to your lowest state. 

I suppose in that context, if you have a good support network, it is like having someone 'hold the ladder' for you to increase your stability.

And comments like you describe you received yesterday must have been very destablising for you. (and I hope you feel a little better today, but these tremors take a while to recover from).

Maybe then if the goverment actually did something to help, it would be making sure those with small windows have good ladders.

I agree wholeheartedly with your description of experiences TheCatWoman which resonate with mine.

Cynical? or instead a realistic assessment based upon experience and observation?

I admit to being almost burnt out to near non-existence myself from such experiences.  From which position the capacity to push back against what seem like overwhelming odds is deeply weakened.

However it is perhaps people such as me and yourself who "know it as it is" who are best positioned to tell it like it is to those who want to hear.

"Don't get mad get organised." Springs to mind.  I wonder whether the "Autistic People's Revolutionary Party" would have any legs.  These days I am even concerned that typing something like "revolutionary" (oops I done it twice) could see me imprisoned tho'.

Do you know? I've just flipping had enough!

I wonder if ND people say what they actually think the NT's will tell us we're disregulating and need to go and sit in a quiet, darkened room blowing bubbles and other sensory things until we've calmed down, in other words, Eff off and don't come back until you agree with us.

I know they can't experience the world as we do, but then there's lots of things we can't experience that others do, like I can't imagine what it's like to be able to pee standing up, but no one would deny men the use of a urinal. I suspect that they will look for the most common denomiators, such as ASC and ADHD and tailor all services towards that combination, I already feel that because I don't have ADHD or OCD that I'm treated as unusual and in terms of service provision that means they dont' know or want to do with me.

As more and more things are coming under the ND umbrella, such as dyslexia and Bi Polar, I fear we will end up with services which are one size fits no one where will will be put on a pathway of therapies that NT's think are right and anyone who either dosen't engage or the pathways offered are unsuitable will be marked as uncoperative and too difficult. I suspect that a whole load more insulting jargon will be created to describe and attempt to contain us, words like disregulating, I hate that term, we get upset and overwhelmed and can't cope, often we maybe right to be upset and/or angry, making us go and sit in a padded cell and blow bubbles for a bit isn't going to deal with why we're upset or angry, it's going to furhter disempower us.

And yes I'm very cynical about these things, maybe I've sat on to many meetings where these sort of things get discussed, anything multi-agency has to establish a pecking order of who's the best qualified and therefor should have the most say. Who will run around behind the backs of the others in order gain support and exclude people, especially those at the front line, who don't control the purse strings.

Thanks for your patience Cinnabar_wing 

You inquire whether that state described is really you.

Those things are ascribed as being demonstrated by autistic people according to a neurotypical perspective yes.

It is hard to come to terms with being the person they describe.

Especially when one works so hard in these situations.

I believe that you are perfectly correct to question the sweeping judgement also.

As I can best describe at the moment, a model that may explain this being that everyone may be considered to have "a window of capability" for any situation.  Including social engagement.  It is a window where if one's stress levels are such that one is "above the window" then ill judgments and to a certain extent mania are at high risk of being displayed.  Below the window and there is a shutdown of capability.

According to this model autistic people have a relatively small window of capability compared to a neurotypical norm.

Furthermore events and experiences can transpire that closes the window further.  

There is the possibility that events and circumstances can open the window too.

It may be that what you describe fits into this model?

If I apply the model to myself - currently I have a very small window.  Perhaps not coincidentally because yesterday I had it very strongly pointed out to me by what my lowest state is.  In a fashion that given the situation might best be described as bullying.  Personally I think this not only demeaning but also traumatic and has a cumulative effect on "window size".

Hehe anyway that's opened a "window to my soul" too.

Best Wishes

LucyLandRover said:

It really is so wrong that many NHS trusts spend more on PFI payments than health care.

It will be telling to look at the owners of the PFI investors - see who they work for, who the directors are, who their shareholders are, who the parent company is etc.

This is where a lot of conflicts of interests can arise and where you will see MPs pop up on the board of directors when they leave office or suddenly appear as a major shareholder - the most common way to legally take a bribe while in office.

If the company are private then the shareholder info can be really hard to get or it will be owned by another company which makes it more opaque.

There are a load of other shady tactics for MPs to be given a juicy "incentive" to push a particular law through parliment.

Not that I'm accusing any MP in particular of course, I don't want the old bill meeting me at the airport the next time I fly into the country to discuss my posting online about it...

As far as I'm concerned it's good that they are at least acknowledging autism and it's effects on people. 

Without that official recognition then we would be still stuck in the past with no recognition and no acknowledgement of the issues faced by autistic people. 

As someone in their late 50's there's a very high probability that i would be losing my job in the next year or two thanks to my autism putting me at a significant disadvantage in playing the office politics game. My employer even made it possible to get myself tested for a  modest sum through the corporate healthcare benefit. So after decades of thinking that i'm different and don't fit in, I now know that i don't. Which makes it easier for me to accept when things don't work out for me and I can now ask for accommodations to even my odds. I might still lose my job, but I have a much better chance of keeping it or getting another one now. 

As far as the wider issue goes about the government accountability it's evident in the document and in the points raised in the thread. It goes far beyond neurodiversity issues. The issues with privatisation in recent years- water scarcity in the south of England, ridiculously high energy prices despite being on an island with an abundant and varied supply of energy sources. The constant attacks on the social safety net. The constant moving out of retirement age. They can't or won't pay for the NHS.  They can't even afford an effective military to defend the UK. All of this points to an abject abdication of responsibility to the UK population at large. This is the direction of travel since the Thatcher era. It's still pushed in government and the media as the way forward in the message that people should be voting for a low tax,  small state. Which is effectively going to push the people under corporate governance and an unaccountable minimally democratic state. 

So with all of this in mind yes the inquiry is unlikely to provide any real help for autistic people in general but at least we're acknowledged and let's face it, it's an a subject that's still very much finding it's feet and still has a way to go before academia gets close to a full understanding of ASD. It's come a long way in the last 10 years though.

It might turn out to be the least of our problems in another 20 years though...

As a member of We Own It, we campaign on this and sent messages to our MP's to protest and they have responded as PFI was barely mentioned in the budget. It really is so wrong that many NHS trusts spend more on PFI payments than health care.

thanks Cinnabar_wing :-)

agreed emma90 :-)

Haha indeed, legally binding and guide within the same sentence is slightly troubling... but then again I imagine if you read through 10 government reports at random there'd be a lot of phrases that could be scrutinised and boiled down to mean very little! 

In the end I suppose all publicity is good publicity, and if nothing else if it gets a few people thinking and trying to be a little more considerate and inclusive that's only a good thing.